A Day with the Downs Syndrome Association - SA

Tuesday 18th March

Dee – a very upbeat Zulu lady – met me early this morning at a service station a few miles away from where I am staying. I took to her immediately. Her passion for what she did – her bounce & her infections smile – all served to make me feel like we had been best friends for years. A very funny thing happened though. She suggested that rather then follow her, which we had originally planned to do – it may be best if I went in her car as she wasn’t very familiar with the area & was prone to getting lost. She drove this way & that – round & round – almost picked up the M4 when she needed to be on the N2. She stopped twice to get directions – but as she was speaking in Zulu – I didn’t understand. Despite the directions she continued to get lost. A couple of times I had tried to interject – and while I wasn’t 100% sure – I had a vague idea in which direction we should be heading – but my words fell on deaf ears – after all – I am only a tourist!. After 20 minutes – I said in a very assertive voice – “Dee – we need to take this road – trust me – it will take you to the N2”. She gave me a strange look – but having run out of options & having nothing to loose – she followed my guidance. And what do you know? We hit the N2 & off we went. She laughed saying that having lived here all her life – she was very impressed with my navigation skills. To which I replied – “ I have got lost in worse areas than this – believe me”.

Dee is a qualified nurse in just about every discipline going. She trained in the “old school” when the course was less integrated than it is now & so over the years since qualifying – she continued with post graduate study to obtain qualification in Mental Health – Midwifery & Community Medicine. She was a nurse in a special school for a while – loved the children & despite taking an enormous pay cut - took a job with the Downs Syndrome Association. Her title is Outreach worker.

The association has a regional office – but Dee is based in a local office which serves an enormous population & geographical area. Her role is varied & despite the “Outreach” title – she is a lone worker & so rarely does home visits. She is informed by local hospitals if a child with Downs Syndrome is born in the area. She co-ordinates appointments for the children & families – runs parent support groups – coordinates access to a genetic clinic - gives guidance on maximising the children’s development & runs clinics for the families she supports. And she does not just support parents of children with Downs Syndrome – she will input into all children with developmental delay.

Today she wanted to show me the Phoenix Assessment & Therapy Centre. The unit is only one of two in the province of KwaZulu-Natal. The centre doesn’t serve the entire province – but a catchment area within it. It seems that families have travelled from the Eastern Cape – stayed with relatives & pretended to be local – to access the centre. I had assumed that it was a specialist provision for children with developmental delay – but no. It is known as a Rehabilitation service. Today I spent most of my time with Leka Maharaj – a Speech & Language Therapist & an Audiologist. In any day she could see people with a host of different issues. (Children with developmental delay – ASD – Cleft Palate – the whole myriad of conditions. Also adults who may have had a Stroke – or an acquired brain injury). She seemed impressed that in the UK – therapists tend to stay within one speciality. Although was keen to point out that while she could specialise – she could only do so if she were to go into private practice & out of principal – she would not do that. There are only 2 or 3 seniors Speech & Language Therapist in the area & she is one of them. Her dedication to the people she serves – shone through. The Unit is an outpatient’s facility only. It has a Physiotherapist – An Occupational Therapist – A Speech & Language Therapist & a GP who consults for them. She told me that they used to have sessions from the Geneticist – but he wasn’t getting paid as promised so he opted out. The unit carries a waiting list of about 300 at any given time. People wait for a long time to be seen & must make their way to the clinic independently – which may mean using unreliable public transport if they can afford it or walking for miles with their child in their arms. They hold regular multi-disciplinary case discussions & this is the most forward thinking model I have seen to date. The environment is bleak – the equipment sparse – but all the folk who work there have a real passion for what they do & want to carry on. From time to time – they run groups or do community proactive programmes – but not as often as they would like due to the pressures on the service.

Leka was very interested in how we work in the UK. Having spent some time explaining how it operated in South Warwickshire – Leka sat back – said that “our way” is the ideal & something they would strive for but that no one in the Government will listen. She then suggested that perhaps I could speak to someone high up in their department of Health to tell them how it should be done! I almost choked – but could honestly tell her that I have only one full day remaining & am fully booked up until a few hours before my flight on Thursday. I didn’t come here to be a political agitator – but from what the many people I have spoken to have shared with me – someone needs to do it. One of the issues here seems to be that all money is being piled into the HIV & AIDS epidemic & it has been for some considerable time. The problem is though – that regardless of how much money has been spent – it has made no difference at all. The incidence of HIV & ADIS in this province is higher than anywhere else in South Africa. People here – simple haven’t changed their behaviour – despite the campaigns to encourage them to do so. The outcome for other needy groups is no investment – no priority & consequently – no or little Government provided services. God – listen to me – I am starting to sound like a campaigner? I will leave that kind of thing to those with the stomach & the energy for it.

Anyway – I was yet again treated wonderfully by those I met today. The openness & generosity of relative strangers today & during my entire visit – has been humbling. Dee & I sat for a while – had coffee at a café & put the world to rights. It was the little gestures that I discovered to be really big gestures that touched me most. Dee proudly gave me an association magazine. These are printed yearly in January & she gave me the 2007 edition. She apologised for this but explained that while head office get sponsorship to print the newsletters – they receive no funding for postage & so sometimes it can take a long time for them to reach the regional offices – if at all. I may never see Dee again – but despite her heavy work load – she took the day to talk to me – took the time to show me places & arranged for me to see the centre & talk with Leka. Thank you Dee – you have been a star.

Tomorrow I go back to Whizz Kidz. I feel like I am returning to my first love. A place with youngsters I understand – a sanctuary for the children & their families & where I can actually do something positive. Thank God for Whizz Kidz?